Bill to stop New York from sending residents to the JRC

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ASPartOfMe
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05 May 2022, 2:53 pm

ASAN action alert

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For years, the disability community has put in the work to close the Judge Rotenberg Center. While much of our focus has been on the national level, there is now critical state-level legislation that would affect the Judge Rotenberg Center. The New York state legislature is introducing a bill that would stop the state from sending any more people to the JRC.


Most of the JRC’s residents come from New York. If Andre's Law passes, more New York residents cannot be sent to the JRC, which is a huge and important step towards shutting down the JRC for good.

Our community can’t wait -- we must take this critical step toward ending the torturous practice of shocks as behavioral control, and towards closing the Judge Rotenberg Center. We know this fight has been a long, difficult path – but it’s not too late. Your advocacy will make sure we #StopTheShock for good. We need our New York members to call your state legislators! Please share this call to action with any resident of New York so we can make our voices heard.

Within the link, there are tools for non-New York residents to send a message to send message to the NY state legislator as well as tools for New Yorkers to call or senda message


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06 May 2022, 4:13 am

Are you sure you posted the correct link?

The link you posted does not appear to be to any ASAN resource, but rather to a page on the Queens College website that requires password login.


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Mona Pereth
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06 May 2022, 4:19 am

Here is a link to NY State Senate Bill S8935.

If you live in NY State, find your State Senator here and find your State Assembly member here.


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ASPartOfMe
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06 May 2022, 9:26 am

Correct link I hope


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06 May 2022, 2:42 pm

Im sure the JRC is an unpleasant place. But if these kids are violent & destructive and their needs are too high to live at home with their parents where will they go if JRC closes?


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06 May 2022, 9:26 pm

carlos55 wrote:
Im sure the JRC is an unpleasant place. But if these kids are violent & destructive and their needs are too high to live at home with their parents where will they go if JRC closes?

Every other facility in America that deals with violent and destructive autistics has found ways to deal with them without shocking them with varying degrees of success and failure.

That said these people will need to be dealt with extra special caution because not only are you dealing with severe autism but PTSD, and people who have been trained to be obedient beyond reason.


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07 May 2022, 3:21 pm

ASPartOfMe wrote:
carlos55 wrote:
Im sure the JRC is an unpleasant place. But if these kids are violent & destructive and their needs are too high to live at home with their parents where will they go if JRC closes?

Every other facility in America that deals with violent and destructive autistics has found ways to deal with them without shocking them with varying degrees of success and failure.

That said these people will need to be dealt with extra special caution because not only are you dealing with severe autism but PTSD, and people who have been trained to be obedient beyond reason.


Wouldnt a smarter move be to just campaign to ban shocking the kids and just change the management & name rather than close down a mental health service facility that`s needed?


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07 May 2022, 4:17 pm

Agrees with above Post by Carlos. ^^^^


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ASPartOfMe
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07 May 2022, 8:28 pm

They did try. After years of lobbying, they got the Food and Drug Administration to ban the device for this use but the JRC got a court to rescind the ban.

Appeals court overturns FDA’s ban of electric shock device

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In a 2-1 decision, a federal court of appeals in Washington, DC struck down the US Food and Drug Administration’s (FDA) ban on electrical stimulation devices (ESDs) used at a single facility in Massachusetts to treat self-injurious behavior (SIB) or aggressive behavior (AB).

The US Court of Appeals for the DC Circuit, in siding with the plaintiffs, found that FDA’s ban on the devices for their particular use is not supported under statute and infringes on the practice of medicine.

FDA first proposed banning the Class II devices, also referred to as graduated electronic decelerators (GEDs), for SIB or AB in 2016 based on the recommendation of an advisory panel in 2014. In the Federal Register notice proposing the ban, FDA wrote the use of the devices to treat aggressive and self-injurious behavior poses “a substantial and unreasonable” risk to patients. FDA also said there was inconclusive evidence that the benefits of such treatment outweigh the risks.

Four years later, FDA banned the devices, which at the time were used solely by the Judge Rotenberg Educational Center (JRC) in Canton, MA to treat approximately 50 patients at the facility. The move marked only the third time the agency had banned a medical device after banning powdered gloves in 2016 and prosthetic hair fibers in 1983.

In response, the Judge Rotenberg Center and the JRC Parents and Friends Association, Inc. challenged the ban in court and separately petitioned FDA to stay the ban’s provisions calling for patient-directed transition plans for devices in use on specific patients by September 2020. FDA granted the petitions in August 2020, citing the COVID-19 public health emergency. “The stay is in the public interest and interest of justice because of the ongoing national emergency,” the agency wrote, adding that it would substantively respond to the petitions after the public health emergency ends.

In its opinion, the court looks at two statutes underpinning the arguments in the case. The first, 21 USC § 360f, grants FDA the authority to ban medical devices; the second, 21 USC § 396, prohibits FDA from regulating the practice of medicine.

In this instance, the court finds that FDA’s authority to ban devices does not extend to banning specific uses of legally marketed devices. “The statute states that the FDA may make ‘such device a banned device,’ and the natural reading of that language suggests a device either is banned or it is not. It speaks of no authority to place a device in an intermediate state of ‘banned in some uses,’” the court writes.

The court also notes that section 396 “expressly denies the FDA authority to construe any part of the Food, Drug, and Cosmetic Act, including its authority to ban devices under section 360f, to permit FDA to,” limit or interfere with medical practitioners’ authority to prescribe or administer legally marketed devices.

Here, the court points out that the devices are still “legally marketed” because it is “legally marketed if it is lawful for a manufacturer to sell the device or a practitioner to prescribe or administer it,” citing other uses for ESDs, such as quitting smoking. “The statute does not suggest … a limitation that the device must be marketed for the particular use for which the practitioner wants to utilize the device,” the court said, arguing that such an interpretation would “eviscerate” protection of off-label use.

The court adds that had Congress intended for FDA’s banning authority to escape constraint by section 396, it could have done so via legislation.

“No one disputes that section 360f permits the FDA to ban a device completely. The FDA could even decline to approve a device in the first instance. The problem is that once the FDA approves a device and then tries to ban it for specific uses, it defies the limitation that section 396 imposes,” the court concludes.

The court also raises Federalism issues, noting that states have traditionally regulated the practice of medicine and citing Massachusetts’ “very active role in regulating the [Judge Rotenberg] Center’s use of electrical stimulation devices.”

In his dissenting opinion, Chief Judge Srinivasan argues that, “It is eminently reasonable—and entirely consistent with the statute’s purposes—to conclude that the FDA may impose a more targeted ban focused solely on a device’s unreasonably dangerous intended uses.”


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08 May 2022, 3:33 am

carlos55 wrote:
Wouldnt a smarter move be to just campaign to ban shocking the kids and just change the management & name rather than close down a mental health service facility that`s needed?

The proposed bill would not close the JRC down directly. It would just refuse to pay for treatment there as long as they continue to use electric shocks (or other physical torture) as punishment.

Because most of the JRC's clients are from New York State, this might, perhaps, effectively pressure the JRC into not using the shock devices anymore, so they could become eligible for NY State funding again.

Previous attempts to get the shock devices themselves banned, at the federal level, have not been successful.

(Personally I don't have very high hopes for this bill getting passed at the present time. The JRC, as far as I can tell, seems to have lots of powerful allies who will likely lobby against the bill.)


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08 May 2022, 9:47 am

This is insanity …the JRC. Needs a healthy equivalent..The fact that JRC got away with overturning this ban
Show to what degree psychopathy is prevailing in that State .


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ASPartOfMe
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09 May 2022, 12:19 am

Mona Pereth wrote:
(Personally I don't have very high hopes for this bill getting passed at the present time. The JRC, as far as I can tell, seems to have lots of powerful allies who will likely lobby against the bill.)

Even if it does get passed the JRC will find a way to have the bill nullified.

Jakki wrote:
This is insanity …the JRC. Needs a healthy equivalent..The fact that JRC got away with overturning this ban
Show to what degree psychopathy is prevailing in that State .

It was a Federal Court that overturned the ban.

The inability to get this situation changed despite decades of trying is the biggest black mark against the disability rights movement.


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Last edited by Cornflake on 09 May 2022, 5:51 am, edited 1 time in total.: Fixed broken quote

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31 May 2023, 4:22 am

May 15 Update

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Proposed state legislation would block government agencies from sending disabled people out-of-state for “adverse conditioning” banned in New York nearly 20 years ago.

“Andre’s Law” is named in honor of Andre McCollins, who was shocked with electricity 31 times over seven hours as a teenager in 2002 for refusing to take off his jacket at the Judge Rotenberg Center outside Boston, the only known facility still offering such treatments.

“It isn’t fair that the Judge Rotenberg Center gets a pass to torture our children with special needs. How is this going on for so many years?” Cheryl McCollin, mother of Andre, said at the state Capitol on Monday.

Records show city agencies like the New York City Administration for Children’s Services and the Department of Education have paid at least $7.6 million this year to the Judge Rotenberg Center for child welfare services.

The State Education Department and the Office for People With Developmental Disabilities do business with the center, typically on behalf of localities that seek state reimbursement.

An SED spokesperson stressed that none of that money is supposed to pay for “adverse conditioning” considering the state ban.

Seventy-eight school-aged New Yorkers are currently at the center, according to the SED.

Bill advocates say New York taxpayer dollars are supporting the center’s use of electric shock whether or not those individuals are specifically getting the so-called treatment as officials claim.

“To be clear, when we’re sending students over there, we are funding that practice,” state Sen. Jabari Brisport (D-Brooklyn), who is sponsoring the bill in his chamber, told reporters at the Capitol on Monday.

But critics note the FDA has already tried to ban the treatments though it ultimately decided states have ultimate authority on the matter.

The ongoing use of the treatment by New York agencies for children and young adults in Massachusetts means the time has come for state lawmakers to close what they call a loophole in the existing law.

An ACS spokesperson said the child welfare agency oversees payments for placements to the center by the DOE, which told The Post that students are sent there at the “discretion” of their parents. The DOE spokesperson added electroshocks are not supposed to be part of the treatment for children sent by the city.

“The problem is our tax dollars are going to places like the Rotenberg Center to ensure that people get shocked, people get injured, people get harmed,” Assemblyman Harvey Epstein (D-Manhattan), who is sponsoring the bill, said Monday.

“All we’re saying is New York state needs to stop. We need to change course. We need to acknowledge that this type of shocking this type of conditioning is pain.”

Brisport expressed confidence the bill could pass the state Legislature in the four weeks that remain before the June 8 end of the 2023 legislative session.

But lobbying records show the Judge Rotenberg Center is not going down with a fight after inking a $68,000 contract with a lobbyist.


78 out of the 130 or 60 percent of the prisoners there are New Yorkers so this is a big deal.

Concurrently there is an ASAN #Stop the Shock petition that is doing quite well


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31 May 2023, 7:30 pm

YaaaY for ASAN , glad they are making progress...It should be in the national agenda in my opinion.
Not fond of the concept of Torture under any conditions


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09 Sep 2023, 2:22 am

I know I said I am not going to post news stories but some problems are more important than my problems.

New York State could end funding of shock treatment for disabled residents under proposal - Newsday
Behind a paywall

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A state legislative proposal would stop the state from spending millions of dollars a year for the care of severely disabled New Yorkers at a Massachusetts center that uses shock treatments banned in New York state.

State Comptroller’s Office records show the state has paid the Judge Rotenberg Educational Center in Canton, Massachusetts $150.4 million over the last 10 years for students and adults. Most students transition into adult residents and the cost is covered by the state until the an appropriate spot opens up in a New York facility. Only adults can receive the shock treatments after medical, legal and parental approvals.

The Rotenberg Center, the only center in the nation that provides electrical stimulation devices for some of its residents, currently has 53 patients who are approved for what are called “skin shocks” by clinicians, a judge and by the residents’ parents. Typically, the center has about 55 residents authorized for these treatments at any one time.

The state said 78 students, up to age 21, and 72 adults at the center are from New York. Of that total, 21 New Yorkers may receive the shock aversion therapy under court orders, according to the Rotenberg Center. The state prohibits the treatments from being used on students, and no adult from New York admitted to Rotenberg after 2013 may receive the treatments, according to state Office for People with Development Disabilities spokeswoman Erin Silk and state Education Department spokesman JP O’Hare.

The treatments are delivered through battery backpacks and waist packs connected to electrodes on their arms and legs. Rotenberg officials try to dispel the idea that the shocks are the same as electroconvulsive therapy, which has been portrayed violently in movies with electrodes zapping electric current into brains.

The power of the shock varies with the patient. The jolt ranges from what supportive parents called similar to a bee sting. The U.S. Food and Drug Administration called it a sharp cutting and burning sensation that can damage tissue.

Although several major pediatric medicine associations, as well as autism and disability advocacy groups, oppose the efficacy and ethics of the treatment, clinicians at Rotenberg said they have proved skin shocks work in many cases of residents with severe developmental disabilities or emotional and behavioral disorders to prevent them from hurting themselves or others.

Some legislators, though, said the electric shocks are barbaric.

“No facility that thinks it’s acceptable to electroshock children can be trusted with their care,” said Sen. Jabari Brisport (D-Brooklyn), co-sponsor of the bill to end state funding for the treatment.

“Our nation has found excuses for far too long to lock away disabled children and subject them to inhumane practices,” said Brisport, chairman of the Senate Children and Families Committee.

Yet parents of residents who receive the shocks tell Newsday that the treatment with “electrical stimulation devices” is the only therapy that helped their children after dozens of other centers in New York rejected them, and after dozens of emergency hospital stays.

“It basically saved my daughter’s life,” said Marcia Shear of Woodbury. She said the skin shocks at the center have allowed her daughter, like all the New Yorkers who reside full time at the Rotenberg Center, to come home for visits without the need for wearing the electrical devices.

The proposed legislation is prompted by a 2021 federal court decision that nullified a 2016 federal ban on use of electrical stimulation devices on disabled patients. Under state law, school districts reimbursed by the state must pay for care of these patients until they reach the public education cutoff age of 21, after which federal programs will cover the cost.

The court ruled in a lawsuit brought by the Rotenberg Center that the FDA didn’t have the authority to “interfere with the practice of medicine.” The court didn’t address “whether substantial evidence supported the FDA’s factual determination.”

The FDA study found the sensation of the electric shocks used at Rotenberg varies greatly with the patient and the behavior and can include tingling, pain and muscle contraction. The FDA cited “burns, tissue damage and errant shocks from device misapplication or failure.” The report cited research that said the sensations could include “painful shocks that are described as sharp, cutting, or lacerating” and “pain that was pinching, pressing, or gnawing.”

The FDA also warned that the practice could lead to post-traumatic stress, nightmares, flashbacks, panic and rage, and changes in sleep patterns.

Two parents who took the shocks as a test before allowing their adult children to be hooked up, however, told Newsday it was a mild pain — but that the benefits to their daughters have been immeasurable.

Shear described the shock she received as “like a two-second bee sting. It was definitely annoying, but it was enough so that it would work.”

Shear said she was desperate. Her daughter, Samantha, grew up thrashing, throwing herself on the floor, hitting her head and eyes. At 12, Samantha’s actions detached both retinas while at a center for severely disabled children in the state. Her parents feared brain damage and deafness would follow.

“No one could handle her,” Shear said. “They said, ‘We can’t handle your daughter … if the Judge Rotenberg Center can’t handle her, good luck.’ ”

Now 30, Samantha has calmed. In September, she’s going home for another visit.

“She’s a pleasure to be with,” the mother said. “We can take her out and before we couldn’t. She’s like a little lady now. It sounds barbaric, but it’s not. … don’t judge until you’ve been in our shoes.”

Cornnis Crawford of Brooklyn took a shock before he would let the Rotenberg Center use the treatment on his daughter, Erin.

“It feels like a cigarette lighter that is hot and you put it on your skin,” the father said. “It just stops you, it’s nothing that goes through your body.”

At the time, Erin had been banging her head so often, the father said it was almost football-shaped.

“There was nothing New York offered that would help,” he said of other treatment centers. “All they were doing was really making it worse.”

Erin, now 35, also still a resident at the Rotenberg Center, goes home for visits and is no longer a danger to herself or others, Crawford said.

“It saved her life,” the father said. “It’s a dream you would hope would happen for your kid.”

Opponents, however, said isolated cases like these don’t make up for the potential harm that can come to children and adults who can’t speak for or defend themselves.

The bill is proposed as “Andre’s Law,” after 18-year-old Andre McCollins of Brooklyn, who was strapped to a board and electroshocked 31 times over seven hours in 2002 at Rotenberg before he was hospitalized for injuries, according to the bill and its supporters. Afterward, his family withdrew its consent for the shocks and removed their son from Rotenberg.

“We understand the way it sounds,” said Nathan Blenkush, a psychologist and director of clinical services at the Rotenberg Center. “But this is a life-changing treatment for many patients, a last-resort treatment that has dramatically affected their lives.”

Most patients had been treated for early autism or other issues from 2 to 5 years old, were in special education since kindergarten, received years of medication and counseling and were probably rejected from traditional special education programs 15 or 20 times and hospitalized 20 or 30 times more for their behavior, Blenkush said. One woman had to be restrained 5,000 times in her young life, causing 340 staff injuries, he said.

He said the nine-point process required before shocks are administered is extensive. It includes parental consent, which parents may revoke at any time; consent by a lawyer and psychologist hired to represent the patient; a treatment plan; treatment status reports submitted to a judge, who must hold an annual review; and a court hearing after which a judge must approve or reject use of electroconvulsive treatment. The case is also evaluated by a clinicians’ peer review committee and a human rights committee.

If an approved patient bangs their head against the wall or floor or takes other actions that hurt themselves or others, they receive a shock. Some patients get multiple shocks in a day, and others can go months without a shock, Blenkush said. The average is less than one shock per week, according to the center. For some, the treatments eventually are no longer needed.

“That’s why the parents fight so hard to maintain this,” he said. “I’m not saying it’s 100% effective … these are very individual circumstances. This is the problem we have with these laws.”

But Assemb. Harvey Epstein, the bill’s other co-sponsor, said the practice is “at best horrific.”

“Obviously there are some parents who feel this is something that can help their children, and that is their private choice,” Epstein (D-Manhattan) said. “But it really is not where we should be spending our government dollars … It’s pretty clear to me that, even for adults, that electric shock is barbaric.”

I am sure that the demonstration shocks given to parents are the "mildest" kind. One has to be naive or as in this case desperate to believe otherwise.

Articles in the past that I have posted show that the vast majority of prisoners there come from poor minority backgrounds.

This was the front page story yesterday in Newsday the newspaper that serves Long Island. The more publicity the proposed Andre’s Law gets the less chance it has of being intentionally buried and forgotten.


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09 Sep 2023, 12:41 pm

Why oh why do they not either close down places like this ..or entirely re-establish them with ALL new employees and all staff. And consider investigating..for crimes ! :evil:


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